Saturday, July 14, 2012

Saturday, July 14, 2012

Tonight's picture was taken in August of 2008. Living in the hospital was SO new and daunting back then, and even though Mattie began chemotherapy, he hadn't lost his hair yet. Pictured with Mattie were Jessie and Jenny, Mattie's art therapists. These two women were incredibly talented, gifted, and special people. They made life much more bearable for us in the hospital and they truly understood all of us, not only Mattie. After Mattie's death, Jenny and Jessie both left Georgetown. In my perspective, the clinic is no longer the same without their presence. The old saying that anyone is replaceable is simply not true. Mattie created two things that day at the art table, the first was a boat (which he eventually took home and sailed in the tub) and an alligator. The alligator was made out of a large clip with googly eyes, and Mattie was holding this clip in his left hand. Mattie's alligator remains in our kitchen today connected to my copper pot and pan rack.



Quote of the day: I learned in the support group that if you were compassionate before your child died, you became more kindly. If you were a selfish SOB, then you acted as if you were the only one who lost a child. I finally got angry and quit the chapter. People competed. One parent would say, "my child died in an accident and I never got to say good-bye to him. At least you got to say good-bye." Or someone whose child had a lengthy illness might say to someone whose child died in an accident, "my child suffered; at least yours didn't suffer." I couldn't stand the one-up-man-ship. I had to leave. ~ Thomas


I certainly know from my educational training that support groups are not for everyone. However, having experienced one session of a grief support group was enough for me to know it wasn't for me! The exact dynamic Thomas describes above is what I observed. From a clinical standpoint, I understand parents are hurting, need to be heard, and also need people to realize how awful their child's death is. But my attendance at that support group shortly after Mattie died was not as a clinician but as a member. I remember distinctly after that two hour ordeal, I was LIVID. I felt we had to compete for air time, and then parents wanted to out do each other in the stories they were telling. I found that NOT only annoying, but most importantly not helpful or therapeutic. A support group is only as good as the members who are a part of it, and unfortunately one bad experience does cloud one's judgment to try this avenue again.

It does become an interesting dilemma however, when you feel that you can't be heard and understood by parents who haven't lost a child, and then you attend a support group with bereaved parents, and you don't feel connected there either. There are many bereaved parents who feel like I do and fortunately over time in our case, I eventually met several families touched by the death of a child whom I could relate to. This camaraderie makes a huge difference. 

Despite the intense humidity today, Peter and I went for a walk on Roosevelt Island. We hadn't been to the Island in weeks. Walking was absolutely painful in the heat, but as usual we weren't disappointed with the sightings. A beautiful great blue heron was sitting in the Potomac River, and because I did not want to carry my camera with me, I missed the opportunity to capture that moment. Weekends can be challenging for Peter and I, and given how I have been feeling, my fuse is very short. Yet Peter and I have been married quite a while, and dated for 7 years even before that, so we are pretty much used to each others highs and lows. With Mattie's death of course, some of these moments can seem more pronounced. However, this weekend, we are celebrating our anniversary, and as such we are trying to get out and do things, and appreciate the fact that we do still have each other.

Friday, July 13, 2012

Friday, July 13, 2012

Tonight's picture was taken in August of 2008. Mattie began chemotherapy in August of 2008, and one of the things he instantly turned to throughout the battle was art. Next to us, you will see the FIRST ceiling tile in the clinic that we as a family (Mattie, Peter, and I) painted together. This tile remains in the clinic today. Mattie LOVED Scooby Doo, and this tile kept us focused, talking, and invested in something, at a time when we were beyond frightened and scared!


Quote of the day: I was very close with my sister before Tanya died. Her daughter was six months older than Tanya. Four years after Tanya's death, my niece was getting married. I couldn't go to her wedding. It was just too painful a reminder for me to face. I had to protect myself. My sister couldn't forgive me for not coming. The bride understood. But I'm alienated from my sister now. That's another loss. I want her in my life again. ~ Veronica


As I mentioned before, I am reading When the bough breaks. Within this book was tonight's quote. Unlike Veronica, I do not have a sister, however, regardless I can relate to the sentiments she expressed wholeheartedly. The reaction that Veronica had with her sister, I have with my friends. Veronica couldn't attend her niece's wedding, and I view this as equivalent to being unable to attend birthday parties and graduation ceremonies of my friends' children. In Veronica's scenario, some people understand and yet some do not. It can be painful for me to attend events that I know Mattie will never be able to participate in. Not being able to attend milestone events is a loss for me as a parent but also as a person. At times it feels like I am a complete outsider and do not feel like I would belong even if I decided to attend. Nonetheless, I am not sure what the solution is, since not participating in things can affect relationships because when you can't connect over such meaningful dates and occasions, then it becomes hard to know what to connect on. I find this particularly true with my friendships which were established over our common role, being a mom.

Today, I had a close to five hour licensure board meeting. I began working on the licensure board before I became pregnant with Mattie. The board has known me as a doctoral student, a professional, a mom, and now a bereaved parent. In so many ways, I have grown up on this board. Our board attorney jokes with me all the time. When I first joined the board, I did not have a solid understanding of the enormous responsibility before me. I thought we just processed applications of individuals who wanted to become professional counselors in the District of Columbia. This couldn't have been further from the truth, since this accounts for about 1/4 of what we do! The board also helps to create and uphold licensure laws, we are responsible for overseeing ethical violation hearings, sanctioning professionals which can involve revoking licenses, and interfacing with the public and licensed practitioners who have questions about how the profession is regulated. Needless to say, NO meeting is ever boring. It is very stimulating, and forces one to think legally, ethically, and at times have a vision for the direction of the profession. Most of the things I did professionally before Mattie got cancer and died, NO longer interest me. But working on the licensure board still excites me, stimulates my mind, and keeps me connected to my profession.

This evening Peter and I went out to dinner, and as we were headed home, we bumped into a neighbor. She started talking to us about how her life did not turn out how she expected. That in reality, she has learned that life is filled with great disappointments. She is preaching to the choir on that one, but I listened and did not lament, instead I empathized with her. I did this because I feel deeply for anyone who tells me that things did not turn out as planned, which means that things did not turn out like one hoped. Hope is a funny word, it is hard to describe and even harder to understand how to achieve it. Yet lack of hope can be easily seen in the eyes, demeanor, and words of a person. As I reflect on my neighbor and all of us who have lost hope in our lives, may we find it somewhere, because without it, even a flicker of it, it is quite hard to live from day to day.

Thursday, July 12, 2012

Thursday, July 12, 2012


Tonight's picture was taken in August of 2009. Mattie was home temporarily from the hospital and was building a LEGO structure in the living room with Peter. Back then, our entire living room, looked like a LEGO warehouse. As you can see, Mattie was having a challenging time breathing, and needed oxygen at all times. As I sit back and look at this, I have to say I was and am amazed by Mattie. I know how scary it is to feel sick and to not know what is happening to your body, but for this to happen to a seven year old, I imagine Mattie must have been terribly frightened at times. Yet Mattie never cowered in the corner, or even questioned why he needed oxygen. He accepted it and kept on going. I do attribute a small part of Mattie's spirit and courage to Peter and I. We were always with him, advocated for him at all times, and tried to normalize a very abnormal situation for him. It was very clear the love and appreciation went both ways.  


Quote of the day: Talking is comforting. Talking is comprehending. Talking is healing. Talking is remembering. This parents must do. This they will do. Anyone standing between these parents and their need to express themselves about the experience of their loss and their feelings relative to it will be deeply resented, and eventually their friendship discarded or pushed aside. ~ Ronald J. Knapp


I had the opportunity to get together today with a consultant who helps non-profits with fundraising, strategy, and development. This consultant and I share a mutual friend, and it was my friend Heidi who connected us together. I am always amazed when a professional approaches me and offers guidance and help pro-bono. Jen attended our Whole Foods Day in Alexandria in January and our Foundation Walk in May. She wanted me to know that for a person who does not have a background in marketing, fundraising, or running a company, I am doing great! Her insights today were very helpful, because just like a financial portfolio, one also has to diversify funding sources for the health of a non-profit. We talked about a whole host of things today from targeting grants to corporate sponsors. Jen confirmed my thinking, hosting more fundraisers is not the solution. We have to seek revenue from other areas, and I look forward to pursuing and learning more about this from her.

In the midst of us discussing Mattie Miracle, we also talked on a personal level. Like me, Jen is a mom of an only child, a son. So with that alone, we have instant commonalities, and therefore, my story hits quite close to home for her. Yet despite that, I admired her courage to want to meet with me, to want to help, and to also want to hear about Mattie. One thing I do notice, is once I start to explain the necessity of psychosocial support and services for children and their families with cancer, people get it. They see that surviving cancer takes much more than just the medical treatment, because as those of us personally touched by cancer know, the treatment is only a small part of the battle. Fighting cancer is a day to day battle, that goes on well after the treatment is over.

Later in the day I received an email from Jen. She wanted me to know that she found our interaction energizing, which I was happy to hear. Since I felt the same way, so much so that soon as our meeting was over, I stopped by Peter's office to briefly chat with Peter about the information I learned.   

Wednesday, July 11, 2012

Wednesday, July 11, 2012

Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's situation was terminal. Clearly I did not take this picture, but this photo says an awful lot about that moment in time. Moments that weren't always pleasant! First if you look at Mattie, you will see he had cups covering his ears. Mattie was NOT trying to be cute. Mattie was simply on overload, he did not like all the sounds in the clinic, and was getting agitated. He was trying to block out everything, and typically under these circumstances I would remove Mattie to a quieter location. But that day the clinic was a zoo and there was NO place to remove him to. Second, as you may notice I had to flush Mattie's broviac lines, since the dosage from the pain pump was completed. Typically in a hospital setting, I was not able to administer medications of any kind to Mattie. Only hospital personnel are allowed to give out medications! However, this pain pump was supplied to us through our in-home pharmacy. Therefore, I was trained to use it and also had to maintain it. In essence, Peter and I were Mattie's in-home nurses and doctors! The third component in this picture was my blackberry. This red phone was literally right on the table with us. It was during Mattie's cancer battle that the phone became my fifth appendage. An appendage which I still carry with me today. When I look at this picture, it actually makes me sad. Sad because I can tell Mattie was uncomfortable and greatly unhappy, and yet I still had to drag him to clinic to be monitored. The irony of all of this is we spent most of our treatment time in the in-patient unit, and very little time in the clinic. You would think therefore that I would shy away from the in-patient unit because this is where most of our trauma and then loss took place. Yet, for me it is the exact opposite. I dislike entering the clinic, I find it depressing, and it brings back bad memories, memories like the time portrayed in this photo. 


Quote of the day: I want everyone to know I had this beautiful gift and it's gone now. I want everyone I see to know that I am in great pain. It would be easier if you lost a leg - then people could see it and say, "Oh! you lost a leg, how terrible." But when you lose a child, lose an only child, you've lost a part of yourself. I lost a bigger part of myself than a leg, the me that was important to me, and no one sees it. ~ Enid


Today, I pulled out all the books on grief that were given to me since Mattie died. I assure you, I have quite a library. One of the books I perused through today is entitled, How to go on living when someone you love dies. The book devotes one chapter to the loss of a child. So naturally I went to that chapter first after skimming through the introduction. Within that chapter was this paragraph................................

"There are greater social problems in responding to the death of a child than to other deaths. This is because as a bereaved parent you represent the very worst fears of every parent. If it happened to your child, then it could happen to my child. As a result, bereaved parents are avoided more than most other mourners and are victims of social ostracism and unrealistic expectations. This is why so many report that they feel like social lepers. The strange and callous response you may get from others can lead to a lack of important social validation about your child's death and also about ongoing reality. Like individuals who participated in sensory deprivation experiments, you will have difficulties with judging reality if you do not get feedback from others in your environment. When this lack of support and validation is coupled with the inappropriate expectations that society has for bereavement in general and specifically for the loss of a child, you actually can be hurt by society - it not only doesn't help you but can also make the situation worse for you."

What struck me about this paragraph is it elaborates on the loss of social friendships and connections that I have been writing about for almost a week now. However, it honed in on the actual problem, which I wasn't able to truly articulate! Certainly the demise of a friendship is hard enough to face, but it is the meaning of this disconnection that is devastating. Because changes in friendships signify a loss in social validation, a disconnection from reality, and as a result it makes an already volatile and difficult situation much much worse for the bereaved parent. Or as the author points out, a bereaved parent can actually be hurt by society. I suspect, many bereaved parents learn to turn inward, not express their true emotions, and therefore not talk to others about their lost child on a regular basis. However, the irony is that in order to process grief and cope with the loss, one has to TALK about it. If you can't do this with your friends, then who are you going to do this with? I suspect many parents turn to professional help because their typical support system within their community can't or wont help.  

The highlight of my day was meeting my friend Junko for lunch. Junko and I had a lovely time at one of my neighborhood favorites and chatted for hours. The funny part is typically I am aware of my surroundings, but today, time went by and I paid no attention to the crowds of people coming and going around us. The beauty of Junko is I do not need to advocate for my position on grief, the long-term issues associated with it, or how my life has and is changing. She just accepts this as a given and therefore, I do not have to work on explaining myself, my behavior or how I am feeling. So what that produces within me is a feeling of validation, acceptance, and doesn't put me on the defensive. She validates that I am entitled to feeling how I do and doesn't make me feel judged or measured by some sort of imaginary societal timeline for grief. I haven't felt good for days because of asthma, but today's outing was a special and unique treat. Junko was one of the first moms I met at Mattie's elementary school, and back in 2007, we instantly connected. Now that Mattie is gone, we still instantly connect, but more importantly trust each other. Another gift brought to me by Mattie.   

Tuesday, July 10, 2012

Tuesday, July 10, 2012 -- Mattie died 148 weeks ago today.

Tonight's picture was taken in July of 2009. By that point Mattie was finished with chemotherapy and his hair was beginning to grow back. Mattie had completed three massive surgeries (two limb salvaging surgeries and a sternotomy) but it was before we learned that Mattie's case was terminal. I snapped a picture of Mattie with Anna, his physical therapist. Anna had tried using a front faced walker with Mattie, but he refused to step an inch with it. For some reason it was hard for him to manipulate it especially since both of his arms were weak from surgery. So then one day Anna decided to let Mattie use the walker you see in this picture. Mattie gravitated to this walker, and also to the antics Anna planned for him. Around the physical therapy hallways, Anna placed whoopee cushions in strategic locations for Mattie to find. Mattie was motivated to walk to them, just so he could stomp on them and hear the funny noise they made. Naturally such a noise was absolutely hysterical to a seven year old! You can see as Mattie was stomping in this photo, Anna was also laughing right alongside him. This only further egged Mattie on and inspired him to find the next noisy target.


Quote of the day: You live with the fact that you will never feel pure joy again. It will always be tinged with the sadness of longing. Every happiness is weighted. It's like a vise slowly squeezing your heart. Whenever you feel happy, you remember that your child isn't here to share it, that she isn't here to have the joy in life she deserved to have. It's always that minor chord intoning in the background. ~ Margot

Today I went to my third doctors appointment for the week. When my doctor came to examine me, alongside her was a medical intern. A medical intern is in essence a physician in training, in which he/she has obtained a medical degree but is not licensed to practice independently. Keep in mind that today was this medical intern's FIRST day of clinical work and to conduct a clinical history/intake. GOD help him!

I strongly believe the social sciences need to become better integrated into medical education. I am sure medical schools are excellent at drilling INFORMATION and skills into the heads of their students, but the art of interacting with a patient is NOT taught! I would imagine this is deemed an undervalued or unnecessary skill. Yet if med students had to take even one semester of interviewing skills and the art of human dynamics, I suspect in the long run this would make them more effective doctors. Because with patients the art of communication is not in facts and numbers captured in a chart, there are more subtle non-verbals that I think most physicians miss. It is within these non-verbals that many issues and problems lie. However if you aren't looking at the patient then you won't see these clues, and if you can't see them, you most definitely can't explore them (which produces an inaccurate assessment and treatment plan). I suspect doctors miss a great deal of the non-verbal messages patients send them for various reasons. The first reason, is they are poorly trained in communication and interviewing skills, the second reason is they are not given the time necessary for a true meaningful interaction/exam with patients, and third, in our litigious society, everything has to be documented. Which of course is important, but having to write or type into a computer creates a visual barrier for doctor-patient eye contact.

Back to today's medical intern. So my physician gave an overview of my history and issues to the intern. One of the issues she tells him about was Mattie. He registered that and did say he was sorry for my loss. But you could tell he was just overwhelmed, a deer in the headlights, and the notion of doing an intake scared him. The intern began asking me intake questions in front of my doctor. He was literally going through a check list on the computer screen in front of him.  After questions about my medical history, he then asked me if I was anxious or depressed. With that I started laughing! He of course had no idea how to respond to my laughter. At which point my physician stepped in and gave her two cents. Her response was basically that given my circumstances it would be hard not to be anxious and depressed. Yet she went onto say that I run a Foundation and am constantly doing things to help others. I listened to her explanation. The explanation fascinated me! Does it mean if you help other people and think outside of yourself that you can't possibly be depressed or anxious?! I knew what she was saying about me, but I can definitely say you can be active, do things for people, and still feel anxious and depressed!

I would like to end tonight's posting with a message I received from my friend and colleague. Nancy wrote, "your comment about Maya and Mattie meant a great deal to me. It reminded me how our friendship took a deeper turn when you were so helpful and compassionate during the time of my Mom's decline. I felt so helpless and sad that my relationship with my mom was not as it had been and your dissertation and thoughts normalized so much for me at that time. That is what I took away from the description of the photo of the two children. You said it perfectly when you mentioned how it allowed Mattie and Maya to be children, while cancer was robing them of their childhood. For me, friendship is being able to hear and understand the depth of the words, not just hear the sounds through one's own filter."

Monday, July 9, 2012

Monday, July 9, 2012

Tonight's picture was taken in July of 2009 at the Lombardi Pediatric Cancer Clinic. Next to Mattie is Maya. Maya was the only friend close to Mattie's age that he made in the Hospital. Maya is a bright and sensitive person, and she just clicked with Mattie. They would have conversations together, create, act, and paint. In fact, in the clinic even today, you can see the rainbow ceiling tile they painted together. In this picture, Mattie and Maya created this intricate box. This wasn't an ordinary box. With their imagination, the box represented another planet with alien creatures coming out of the box and exploring the clinic. Literally Mattie and Maya had a performance for all of us who were willing to listen and watch that day. It was certainly a day to remember! What this photo further indicates to me however, is that cancer can not be survived and battled without friends. For just that little bit of time, Maya helped take Mattie's mind off of his pains, illness, and treatment, and he got to play and most importantly feel like a child, not a child with cancer.


Quote of the day: My sister told me that I'm not doing well. I told her that every day I drive over the George Washington Bridge on the way to work and I don't jump off. That's doing well! ~ Cass


I found tonight's quote in the grief book I am reading. Naturally what Cass is saying may sound profound, stark, and raw, but frankly when I read it I LAUGHED. Not because what she is saying is funny by any means, but because what she is saying is a fact and so true for those of us who lost a child!

On September 8, 2009 (the day Mattie died), it was as if Peter and I stepped on a plane and were transported clear across the world. To a foreign land. The only difference however is everything and everyone in our new world remains and looks exactly the same. What changed was us, our lives, our family unit, and therefore the impact of Mattie's death is greatest on us. In fact, this may explain why others at times look upon us as having a problem or needing help. Because through their eyes, their lives have continued, moved on, and though Mattie touched their lives, Mattie wasn't their life! There is a difference. I suspect others would be just as lost, just as perplexed, and just as bothered if they were transported like Peter and I into our new foreign land. The land of bereaved parents! I feel bold enough to state these feelings now based on my readings and also talking to other parents who lost children. What I am expressing here is commonplace to those of us who lost a child, and yet absolutely foreign to some of my readers. Which brings me back to my point about a foreign land. I am still living in the United States of America, but at times I no longer understand those around me, their reactions and insensitivities, and I am quite sure they don't understand me either. Mainly because I have developed a new language, sure it may sound like English, but if you listen carefully, I am speaking with my own dialect. The dialect that was born only as a result of having lost AND survived my son.

Today I ventured to two different hospitals. The first doctor's visit was to contend with asthma, which is the newest physical issue I am dealing with. The second visit brought me back to Georgetown for a follow up visit for the masses that were found in my February ct scan. Visiting with doctors is not top on my fun list, but I know it is necessary. In both situations, a plan has been devised for my medical care, so that alone is a good feeling. Tomorrow, I am headed for my third doctor appointment for the week. I truly believe grief has a very physical component to it, and in my case, it has attacked various parts of me. However, I think the combination of grief and living under intense stress for over a year in the hospital fighting cancer, has caused absolute internal chaos.

Sunday, July 8, 2012

Sunday, July 8, 2012


Tonight's picture was taken in July of 2009. Despite the fact that Mattie couldn't walk and his mobility was quite limited, he was very much a part of all of our activities. That day, Mattie was helping us paint our deck. He even helped to scrape the old paint away. Pay particular attention to how Mattie was painting. The paint brush was NOT in his hands, but in his left foot. Mattie's left leg was named "George." Or as we affectionately referred to it as "Curious George." George was the ONLY limb unaffected by cancer and therefore not operated on, and Mattie used this leg in extraordinary ways. In fact, his left foot and toes acted more like a hand and fingers than a foot!



Quote of the day: Death of a child member becomes an important identifying piece of information about the family. It is woven into its history and into the everyday operation of members' lives. The child who has died continues to be a family member after death. Parents are forever parents of a dead child as well as of the surviving children. The dead child lives in memory. The family grieves for him and remembers him with little comfort and support from the society around them. ~ Joan H. Arnold and Penelope B. Gemma

This evening, our deck was visited for the FIRST time by this glorious sight! This is a Pipevine Swallowtail! We have planted all sorts of flowers in our garden this year, and in one flower pot, we even planted butterfly friendly seeds. I am not sure if the seeds actually worked to attract this fluttering character or whether it is just a fan of petunias, like me!

Either case, Peter and I were both mesmerized by its presence. Peter was snapping pictures of it, and I was just watching. Not unlike Mattie, trying to take a picture of a butterfly can also be elusive! Butterflies and nature help me feel connected to Mattie, and as soon as we saw this magnificent surprise this evening, we both thought of Mattie. As if this butterfly was stopping by to say hello and deliver a message. Keeping our garden alive this summer is a full time occupation, especially with 107 degree temperatures and violent storms. Nonetheless, it is within this space that we both can remember and honor Mattie, and on chance occurrences, like tonight, we have wonderful Mattie signs and symbols provided to us through nature.